The Beginning…

By | Daily Life, Inspirational, Trials, Uncategorized | One Comment

Wednesday January 30th started with a prayer. “Heavenly Father, thou knows Ashtyn has missed school and has been sick for a couple of weeks.  She has been pale and has had very little energy.  Last night my mom called to pass on a message from my dad that he really feels Ashtyn needs to see a doctor.  You know how my dad is.  He isn’t much of a talker but when he does, he speaks with wisdom.  You know how I am.  I think she just has a flu that she still needs to recover from.  Please help her to get better or tell me what to do. In the name of Jesus Christ, Amen.”

And off we went as usual.  I drove Chandler (13 yo) to Butler Middle School at 7:40 am, picked up my adorable nieces Millie (3 yo) and Ruby (1 1/2 yo) from my sister Alisa to babysit for the day.  Went back home, fed kids breakfast, and hopped in the car at 8:30 am to take Ashtyn (12) and Morgan (10) to Canyonview Elementary.  Ethan (6), Millie, Ruby, and I went back home, got ready for the gym and headed to XCEL Fitness.  At 11:30 am I was ready to head out of the gym when I got a phone call from Canyonview Elementary School telling me that Ashtyn wasn’t feeling well and needed to be picked up.  My heart raced in a way it never has when I get a sick call from school.  My sister Jen was at my side and with a worried face I said, “I’ve got to get Ashtyn to a doctor.”  She asked, “Do you think she could have Leukemia?”  “Yes.” I answered.

When I walked in to the sick room at the school Ashtyn was laying on the bed.  After a few days of protesting a doctors visit, with tears in her eyes she said,  “Mom, I think I need to see a doctor.”  “I know sweetie.”

I got a phone call from Chandler letting me know he didn’t feel well and asked if I could pick him up from school.  “Perfect timing, I will be right there.”  By this time it was 12:10 pm.  Ethan’s school started at 12:15 pm so I dropped him off to Kindergarten at Butler Elementary. With urgency in my heart, I dropped Chandler, Millie, and Ruby to my moms and headed for the Insta-care with the knowledge that Ashtyn needed blood work done to find out if she has mono or Leukemia.

We sat in the waiting room for about an hour and once it was Ashtyn’s turn to see a doctor things started happening with no delays.  Ashtyn was truly terrified  when it took three painful needle sticks to get blood work.  The results quickly came back with a very low White Blood Cell count and low hematocrit. I called Jason to let him know we were heading to Primary Children’s Hospital.  It was 2:30 pm. Jason just so happened to be off work driving home and his dad just so happened to be 5 minutes away and headed to my house to give Ashtyn a blessing. ** I have never believed in “just so happened”.  There are constant tender mercies from God all around us everyday showing us his continual and constant hand in our lives.** I drove Ashtyn home, got her in comfy PJ’s, grabbed her favorite blanket, Justin Beiber pillow and a few other things.  Lorin, Jason’s dad, gave Ashtyn a blessing.  I don’t remember a word he said but it doesn’t matter. I know the power of the Priesthood is the power of God and blessed Ashtyn with what she needed at that time.

Once we got to Primary Children’s hospital at 3:30 pm things happened quickly.  The ER took every blood test they needed, but she was calmer with the needle sticks than she was at the insta-care.  Ashtyn: “I trust them more here.”  We first met with the NNP who talked to us about cancer.  We then talked to the Hematologist who also was leaning towards cancer.  Ashtyn was hearing about cancer when we didn’t even know she had it.  In my mind I wasn’t going to assume she had anything until tests came back.  As far as I knew, maybe she had a severe virus and yes maybe it was Leukemia, but I didn’t want to jump to any conclusions.  By 7:30 pm Ashtyn was taken to the 4th floor and given a room in the ICS Immunocompromised floor.  Ashtyn was scared. She wanted to know what was wrong with her.  She didn’t want cancer.  She didn’t want to be in the hospital.  She wanted to be in school. (“What? You never want to be in school. How perspectives change.”) She wanted to be home.  However she felt how I felt, nervous for the unknown but peace in the heart.

Once settled the visitors came and so did her smile, and even her laugh.

We will face this challenge with upbeat spirits.  There will be times for crying, anger, fear, frustration, doubt, and anxiety. There will also be times for peace, happiness, smiles, calmness, and fun.

James E. Faust, “Everybody in this life has their challenges and difficulties. That is part of our mortal test.  The reason for some of these trials cannot be readily understood except on the basis of faith and hope because there is often a larger purpose which we do not always understand. Peace comes through hope.”

The Road To Diagnosis

By | Daily Life, Prayers, Trials, Uncategorized | 9 Comments
Ashtyn and Suzanne

Ashtyn with Suzanne

My brain is mush. I hardly know what day it is, let alone be clear of the events that have taken place Thursday, Friday, and Saturday.  I am definitely at sensory overload and the interruptions to write this seem to be constant.  Ashtyn’s first night in the hospital was one with no sleep.  She had 2 units of blood transfused through the night which meant lots of interruption for vital signs. Even with or without vital signs I doubt any of us would have slept well.  With the silence and lack of distractions, Ashtyn had plenty of time to think and ponder the shock she was living in.  “Is this real?” “Am I going to Die?”  “Mom, this is ruining my plans!!!”  And she did have plans.  Ashtyn had plans to go to school and finish 6th grade. She had plans to continue enjoying our new home, relishing in her bedroom that was her sanctuary with the lime green and electric blue walls with Justin Bieber pictures hanging everywhere.  Ashtyn had immediate plans to help clean a lady’s house in the neighborhood who had a premature baby with the Young Women. She had a plan to learn her new Les Mis song on the piano this week.  She had plans in a few months and looked forward every day for the cruise she was going to go on in April. The Disney Land trip in May. The Lake Powell trip in June. The San Clemente, California trip in August.  Ashtyn had so many plans.

Doctrine and Covenants 121:7  “Ashtyn, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes” and then you will go back to school, learn that Les Mis song, enjoy your home, hang with your friends, go on vacations, and do all that you want to do.  You will do these things as a stronger young woman with a refined character and empathy that will change the world.

Thursday the 31st was the day Ashtyn was supposed to have a diagnosis. The important bone marrow aspirate and biopsy was scheduled for 2:30 pm.  Ashtyn was afraid.  “Will it be painful? Will I wake up during the procedure?  Will you and dad be right by me?  Are you going to leave? Is this really happening?  I can’t do this? I want to go home, NOW!  Why me?”  My answer:   “You can do this.  You are strong, you just don’t know it yet.”

The aspirate went well.  Ashtyn was the cutest thing coming out of anesthesia.  She had a conversation with Jason. Here is some bits and pieces:

  • “Who is Justin Bieber?” Ashtyn: “Ummm” “…Is he your brother?” Ashtyn:  “I have a lot of brothers.”
  • “How many do you have?”  Ashtyn:  “Ahhhhhh…  I’ll go home to count them and then call you.”
  • “So one of your brothers is Justin Bieber, right?” AShtyn: “I’ll have to check.”
  • Ashtyn: “Call Casey and if you find out that Justin Bieber’s my brother can he come up too?”

Throughout the rest of the day and night I noticed that when Ashtyn and I were alone, she was more solemn with time to grieve.  With visitors she was distracted from her worries and smiled from time to time.

Friday February 1st started early with a echo-cardiogram at 7:30.  It was a very thorough one that took a while.  We watched Disney’s Tangled.  Once back to the room they wanted to rush her down to surgery to get a lumbar puncture and central line because there was an opening in the surgery schedule.  The problem was they hadn’t received her results back from her bone marrow to know if she had A.L.L or A.M.L. and she needed a Platelet Transfusion.  They hung the transfusion in the OR and assured me that by the time the prepping was done, they would have the diagnosis.  The plan was to give her a port.  She came out with a Broviac.  What is the difference?  A port is given to those who have A.L.L because ports are better for home care.  However her tests were inconclusive of the type of Leukemia. She had neither A.L.L or A.M.L so they chose the Broviac, which is used for patients who do more treatments in the hospital and need a line that is a “double lumen” which means it has two tubes in the line.  In addition to the difficulty getting a diagnosis, the surgeon had a very difficult time getting Ashtyn’s central line to flow through the vein into the heart.  The catheter seemed to keep hitting something that was preventing it from moving forward and would also cause the catheter to bow backwards.  I feel very blessed that, though the surgeon was quite frustrated, she persisted and succeeded in getting the Broviac in the right place.  The Hematologist later confessed that he really wanted Ashtyn to have surgery that day because that particular surgeon is world renowned.  Not a coincidence. *God’s tender mercy*

Surgery wiped Ashtyn out for the rest of the day.  She wouldn’t eat and was in a lot of pain.

I was anxious in the afternoon wanting to talk to the Hematologist and get some questions answered.  Finally at 5 pm he was ready to talk to me at the exact same time my brother Jason and his daughter McKenzie came to visit.  Perfect!!! *Tender mercy*.  Ashtyn doesn’t like to be left alone so I directed them into her room and went to a conference room with the MD. We talked for an hour.  I was told that since Ashtyn didn’t have either A.L.L or A.M.L the plan was likely to treat her for a month as if she had A.L.L and see if she responded.  If she did then they would go forward with the A.L.L protocol.  If she didn’t respond then they would try a mixture of A.M.L and A.L.L treatments.  I was blunt about my motherly instinct feelings. “I know nothing about cancer but I don’t believe she will respond to the A.L.L treatment. I don’t know what she will respond to.  My guess is that she is going to give you a run for your money and eventually get a bone marrow transplant.”  I hope I’m wrong.

For now, Ashtyn’s condition is perplexing and a mystery. The doctors have spent many hours on the phone Saturday making calls around the world discussing the appearance of Ashtyn’s cancer cells in the bone marrow.  They want to discover the mystery and accurately diagnose her cancer before starting treatment.

During the past 3 days I have learned quite a bit.  But one thing stands out to me right now and that is the importance of facing this challenge with optimism.

Gordon B. Hinckley once said, “We have every reason to be optimistic in this world.  Tragedy is around, yes.  Problems everywhere, yes.  You can’t, you don’t, build out of pessimism or cynicism.  You look with optimism, work with faith, and things happen.”

The Power of Fasting and Prayer

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Today was fast Sunday, the first Sunday of the month.  Across the country I know that there were family, friends, and strangers fasting and praying for Ashtyn.  What effects would that have on the day? And how will it change her future?

I woke up at 8:30 to see my mom walking Ashtyn to the bathroom.  My mom didn’t sleep well last night and felt to come up in the morning.  All day yesterday I was hoping to find time to take a shower. It didn’t happen.  With my mom there I took advantage of the moment and raced to the shower.  What a good way to start the day.  I was also pleased that Ashtyn got the nurse she did.  From the moment the nurse walked into the door I sensed she was a doer.  Good.  I needed someone who had fire in them to get the job done.  What was the job? To get a CT scan and get closer to a diagnosis.

As the morning went on, Ashtyn felt worse and worse.  She became more and more nauseated.  Her headache pounded harder and harder.  Her anxiety grew and grew.  The sight of food made her sick.  Drinking carnation instant breakfast caused her to gag.  Noise was intolerable. Light was too much. Talking to her was out of the question.  Touch was not allowed.  The Elders came to give us the Sacrament.  I kept asking for them to come back until they weren’t able to come back again.  The hospital’s L.D.S branch primary leaders came.  I explained that Ashtyn truly loves church but wouldn’t be able to hear a lesson today.  Her Young Women’s leader and a Laurel came by.  Again, I had to turn them away.  My brother Jared came.  I told him to sit by her but not to talk.  Jared’s brother in law, James, was told the same thing when he had come earlier.

In the midst of her misery there was a crucial CT scan with contrast that needed to be done.  She had to have 800 ml of contrast into her stomach for her to have the CT scan.  How on earth was she going to be able to keep 800 ml of fluid in her stomach when she hadn’t eaten well since Tuesday?  Yesterday she threw up her lime sherbet and Gatorade   Ashtyn knew there would be no way she’d be able to drink that much fluid.  A nasogastric tube needed to be placed into her nose and down into her stomach. What normally could be a fairly non traumatic, quick procedure with lots of breathing and swallowing, turned into a screaming, holding her breath event.  She hated every second of it, but the struggle was not over.  Once the NG tube was secured it was time to start infusing the fluid into her stomach over 1 ½ hours.  Ashtyn was in misery and the only thing I could do was sit quietly at her bedside and plead fervently with the Lord that she would not throw up the contrast.  No contrast in the stomach, no CT scan.  Medications were given to decrease her nausea and anxiety.  In my deepest plea my friend Erin Smith, who has fought A.L.L with her son, came to the bedside.  She knew not to talk but just sat on the couch and rubbed my back as I held Ashtyn’s hand and continued to pray.  Soon Ashtyn fell asleep.  Thank you Heavenly Father for all your tender mercies. I had a moment to whisper with Erin and exchange tears.

At 3 pm it was time to wheelchair Ashtyn to the CT scan room. With hardly any strength or emotion, a mask was placed over her mouth and we headed down. She was placed on the table and the CT scan was done without difficulty.  She did it.  With the strength of God, she did it.

Ashtyn getting CT Scan

Ashtyn getting CT Scan

Once Ashtyn was back in bed the only people in the room were Jason and I.  Her emotions came.

With tenderness and sorrow she said, “I haven’t felt the Spirit.  I don’t feel Him and that He is helping me.”

I turned to the back of my scriptures to D&C 121 and read to her Joseph Smith’s plea when he was suffering greatly as a prisoner for months in Liberty Jail. “O God, where art thou? And where is the pavilion that covereth thy hiding place? How long shall thy hand be stayed, and thine eye, yea thy pure eye… O Lord God Almighty, maker of heaven, earth, and seas, and of all things that in them are… stretch forth thine hand; let thine eye pierce; let thy pavilion be taken up; let thy hiding place no longer be covered.”

“Ashtyn, Joseph Smith was in a short dungeon for 4 months with very little light, cold weather, hunger, sickness, and filthy conditions.  He probably didn’t feel God was near because he was in too much physical and emotional pain. You are having similar feelings as he did.  With all you are going through physically and emotionally, it’s difficult to feel God near.  Ash, I know God is here. He has never left and has watched over you every single moment.  I feel it because I’m not suffering like you are.  Remember when we first got to the hospital, your mind was so scared but your heart felt peace? That quiet, calmness is the Spirit. So close your eyes, don’t think about your pain, or the hospital, or your worries, and listen to your heart and see if you can feel that peace while I pray. And so I prayed and by the end of the prayer she was near sleeping.  I laid next to her in bed and cuddled her left side while Jason was close holding her right hand.  Jason put Pandora on and this was the first song it played.  We laid together listening to the song and cried.

Jason and Ashtyn

Jason and Ashtyn

 

When the song was over I don’t remember grabbing my phone and getting on Facebook, but I did. I must have. Because I started reading:

My, dear, Suzanne —
I occasionally write poetry. As I have been fasting today for Patty and Ashtyn – this one came to me. I asked God’s hand to guide me as I wrote it…and I assure you that He truly did. It was His hand guiding me – it wasn’t me.
Please give Ashtyn my love and share it with her. You are in my prayers constantly and I am here to help in ANY way.
Love,
Caren

Hardly able to maintain my composure, I read out loud to Ashtyn:

For Ashtyn
From Caren Whatcott
2/3/13
When you think of Ashtyn – what do you think of?
Spiritual, happy, adorable, kind, caring – but mostly love.
But now a new word needs to begin to describe her –
BRAVE – for the next weeks or months will be a blur.
What a battle she has on the road ahead,
She needs to know that many a tear will be shed.
She is truly one of God’s most chosen one’s –
Of all His daughters and sons,
Ashtyn, this trial you are about to bear,
Will require from your family and you a lot of prayer.
But always, always remember that the One that came before,
In a very special garden on a very special night, has already bore.
Whatever the destination this path takes you,
Remember that He will get you through.
Through this journey, He will never fail,
Neither will the angels through the veil.
At times, for you, the veil will be very thin,
With all of the angels, friends and kin –
Part of Ashtyn’s Army they become –
So please don’t shrink back from them.
Embrace the tender spirits you will feel all around –
If you quietly concentrate and listen you may hear the sound –
Of God’s tender mercies whisper in your ear –
Ashtyn, I am always with you, my dear.

I am as certain as Caren is that God guided her hand in writing that poem.  There is no way Caren on her own would have known the things she wrote.  Her poem was filled with impressions that I have felt in the last several days.  Caren was an instrument in God’s hand in writing perfect truths pertaining to Ashtyn and showing her that God is near.

Jason, Ashtyn, and I experienced one hour of spiritual healing.  It was a tender and touching moment without one interruption.  The moment naturally ended and the room was busy again with visitors and staff. But something was different.  Astonishingly different.  Ashtyn was talking to visitors with joy and energy.  Where was the pain she had for 2 days? Gone.  What about the nausea? Gone. Anxiety? Gone.  Depression? Gone. She was walking around, texting, facebooking, and talking on the phone.  And she was hungry!  So was I.  After 5 days of no appetite for either of us, we both ate dinner.  She was ready and wanting to socialize.  Two of her friends, Caroline and Kaitlyn, came up to visit.  She walked to the 4th floor lobby with her mask on and enjoyed an hour with her friends.

Ashtyn with her friends

Ashtyn with her friends

She then had her Aunt Trisha and Aunt Brittany come up for movie night until 12:30 a.m. and still had energy afterwards.  I have not seen her better since being in the hospital.  My spiritual, happy, adorable, kind, caring, loving, and BRAVE girl was shining through.

WHAT ABOUT THE DIAGNOSIS?  The CT scan came back negative for any cancer elsewhere in the body other than the bone marrow. The diagnosis is “undifferentiated leukemia” or “poorly differentiated leukemia” because her cancer cells are not any specific type.  It is a high risk leukemia.  The doctors will organize a treatment specific to Ashtyn and likely work towards a bone marrow transplant.

Thank you for your prayers. Thank you to those who fasted.  Today would not have ended so well without the power, strength, and blessings that were poured down from heaven due to your prayers.  Your prayers and the blessings from them are literally surrounding us, and we feel it. We are ready to fight this with earthly angels like you and the angels in heaven.

Preparing For Battle

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Monday night Ashtyn fell asleep submerged in depression.  I worried about how she would feel when she woke up in the morning.

Around 1:30 pm I realized there were three things that needed to be worked on today:  1.  Ashtyn needed a shower and hadn’t had it in her to take one.  2.  She hasn’t eaten well since being in the hospital and I knew it was important for her to eat. 3.  Mucositis will always be a concern and I wanted to get a head start keeping it under control.  When my concerns became apparent to me, my heart burned knowing I couldn’t help her on my own.  I needed to call upon Ashtyn’s Army to join me in petitioning her needs to God.  So I posted her specific needs right away on facebook and the website to get the word out.  Though she has to be woken up every 2 hours to go to the restroom, she quickly would fall back asleep.  Soon after the posts were up, Ashtyn woke from her night’s sleep at 2 pm.

My brother in law, Wendy’s husband Dave, walked unexpectedly through the doors right as Ashtyn was waking up.  Dave hadn’t been able to visit Ashtyn yet and he “just so happened” to come right then.  After greeting Dave I turned to Ashtyn and doubting she’d have an answer asked “What do you want for lunch?”  It didn’t take her long to say, “A big chocolate muffin.”  I asked, “Are those on the menu?”  She said, “No they only have blueberry. 7-11 has them. And I’d like a  Slurpie too.”  Dave was quick to volunteer his services.  An hour later Dave came back with a blueberry muffin, 2 chocolate donuts, a burrito-just in case, and a Slurpie.  He also had a greek gyro lunch for me.  And yes, he did have a chocolate muffin that he found at another store since 7-11 did not have them.  Ashtyn had the desire to eat and she tried, she really did.  ¼ of the donut was all she could do.

Dave is part of the orchestra.  Today he was there to make Ashtyn smile.  He also came at the right time to get food for Ashtyn and me.  I hadn’t eaten yet and wonder if I would have made my first trip down to the cafeteria to pick myself up some lunch.  Probably not.

Dave visits Ashtyn

Dave visits Ashtyn

Side note:  I have gotten messages from family and friends concerned about me and my health.  Because of the concern and reminders, I am trying to eat enough and take vitamins.  I want to be healthy and strong for Ashtyn.

After Dave left I talked to Ashtyn about taking a shower.  It was 3:30 p.m.  She wanted to relax and take it at 5 p.m.  However by 4:30 p.m. she was exhausted and fell asleep.  The nurse woke her up at 6:30 p.m. and when approached to take a shower she made no fuss.  Without argument she calmly allowed for a shower and used a shower chair to rest.  Success!

Once Ashtyn was clean, lotioned, and comfortable in bed, there were medications to be given.  With effort Ashtyn drank a small cup of Jamba Juice for dinner.  She worked at drinking down her pills.  She did her part, her stomach did not.  She threw up everything in the blue plastic bag she keeps near her.  My brother Jared and his wife Nanette had just arrived to see Ashtyn in her struggle.  Like so many of you, Jared has spent hours thinking, praying, and researching ways to help Ashtyn.  He came to visit Ashtyn with a purpose and had a mission for her to do:  “Ashtyn, you need some fire.  You need to be mad and tell your body that you are in control.  Tell your body what to do. You don’t let people push you around so don’t let your body push you around either. You need to be mad and happy.  How?  Be mad at your body and be happy that you have the choice of how you are going to react.  Ash, it’s probably going to get worse. Like a roller-coaster   Its going to get worse, and then better, and then worse, and you have to fight through it and remember that it will get better.  Promise me, Ashtyn, that you will get mad and fight this.  We’ll be mad together and we’ll be happy together.  Be mad, keep praying to ask for help, fight, and be happy.  And then you’ll get home and be normal.  I bet it will be 6 months. That seems like a long time but Nanette’s been pregnant for 8 months and it will go by fast.”

Jared and Nanette visit Ashtyn

Jared and Nanette visit Ashtyn

 

He then played this song for her.

 

When I said that God’s hand will be shown daily in Ashtyn’s life, I meant it.  Yesterday was a day of grieving and depression.  Today was a day to start preparing.  Without knowing it, Ashtyn is preparing spiritually and emotionally for the rough times ahead.  She is inwardly stronger and braver today.  God is helping build her inner strength.  He is helping her prepare for the next battle.  There will be many battles to win. Some will be easier than others.  I don’t know when the next huge battle will come but I do know she will be prepared and she will triumph.

This experience has been so tender.  So special.  So touching.  As I listened to calm music while rubbing Ashtyn’s feet as she went to bed, I felt so honored and blessed to be by her side.  I believe Ashtyn chose before coming to earth the plan that was in store for her.  I believe she agreed to come to earth with the assignment to conquer cancer with courage, strength, and faith.  I believe she willingly accepted the call to have cancer, knowing it was a sacrifice she was making in order to help others.  She will be able to teach patience, faith, trust, compassion, optimism, service, love, and charity.  She will be able to inspire people to care about family and strangers alike.  She will be able to help others recognize their talents, purposes, and strengths. She will soften hearts and bring families together, bond friendships, and rally communities.  She will help others recognize that individuals can change lives and by so doing can change the world.  She will be an inspiration for all to come unto Christ.  And because of her sacrifice and a job well done, she will be blessed.

“I know you are getting many many messages but I just want you to know how much you and your beautiful daughter have changed my life. I worked at Brighton Camp this summer and was so grateful I could know your daughter. I volunteer at Primary’s and hopefully will be stopping by soon. I have gotten to know many children who are fighting with this horrible disease and I understand it is not an easy road. Through hearing about the heartache sweet Ashtyn and your family are going through I have had an answer to my prayers on what I want to do with my life and how I want to help children with cancer. Mainly I want to thank you for sharing your thoughts and your faith with this army of people. I have my mission call but it wasn’t until reading your blog that my faith has increased enough to feel confident in my decision to serve a mission. I know you have many people to help out but if you need someone to organize medical supplies or just clean your house, I would love to help. I have been praying and fasting my heart out as I know many of the other Brighton staff members are doing the same. With all my love! Karen”

As good as it gets in the hospital

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I’m sitting with Ashtyn watching Ratatouille and am feeling such joy.  Yes you heard me, joy.  Joy because of the day Ashtyn had.  Joy for the support that surrounds us.  Joy because of peace.  Joy because of hope.

Today was the best day yet. What made today so good?  Nothing went wrong.  On top of that, the day had a peaceful, fun vibe and Ashtyn accomplished much in her preparation and empowerment.

Last night right before going to bed we talked about the possibility of getting an NG tube today because she hadn’t been able to eat enough calories on her own.  She was adamant about not getting a tube.  Ashtyn had already had an NG tube placed when she got contrast for her CT scan and hated it so badly she didn’t want to do it again.  She had a cup of Top Ramen by her bedside.  With determination in her eyes and disgust in her face she forced a few bites of the noodles.  In a matter of minutes she threw it all back up. “Ashtyn, don’t worry.  We’ll try again tomorrow.”

She woke up this morning at 10 a.m. feeling good.  First thing on the agenda was to eat.  For breakfast I ordered some applesauce and toast.  She ate the apple sauce without a problem and forced down a piece of toast.  An hour later I sat with her entire healthcare team while they were on rounds outside her door. They discussed her progress and plan.  I asked if they would give her one more day to prove she could eat enough calories on her own.  They agreed though they didn’t think she could do it.  I was skeptical as well.  After talking with the doctors and dietitian I went back into the room.  I’m not proud to admit that I tried talking Ashtyn into an NG tube.  “I don’t want you to be stressed all the time trying to eat enough.  The placement of an NG tube isn’t that bad if you relax.  Once it is in you won’t have to stress about eating all the time.  You can eat as much as you want and whatever calories you are short, they will infuse into your stomach over night.”  She would have nothing of it so we figured out something fattening that would likely be tolerated to start building up her calories.  Cheesecake.  I hopped on to facebook and asked for everyone to pray that Ashtyn’s stomach would be able to handle 1800 calories.  She then began to eat her cheesecake with cherry sauce.  Ashtyn ended up eating the entire piece. After she was done with the cheesecake, she had an hour before her Dad brought a pinto bean burrito with rice, cheese, and sour cream from Cafe Rio.  I was amazed to see her eat ⅓ of it.  Those are big burritos!  Later for dinner she had 300 calories of Dibs ice cream bits.  My friend Rain brought her another Cafe Rio burrito for dinner.  (Apparently because I left her other burrito out in room temperature for more than an hour, I had to throw it away.  That’s good to know.)  Unfortunately after her Dibs, she wasn’t hungry for the burrito so I put it in the fridge for tomorrow.  For Ashtyn’s late night snack she had 3 popsicles mashed into a slushy.  (I took three red popsicles and separately put them in the microwave for 20 seconds.  I then mashed the wrappers a bit and poured the thick slush into a cup and threw away the sticks.)  That was a 210 calorie snack.  By the end of the day I estimated that Ashtyn consumed nearly 1500 calories.  Success!   Yesterday’s prayers were answered that gave her the desire to shower and eat.  Today, prayers were answered that calmed her stomach.

Yesterday I mentioned that right now is the time for Ashtyn to prepare for battle.  I sense that it’s my time to prepare as well.  I have come to rely on the support of Facebook messages, blog comments, texts, phone calls, visits, and the prayers of others.  I would panic if I didn’t feel rallied around.  I am strong for Ashtyn because everyone has been strong for me.  Today I had a couple moments where I got a glimpse of what it would feel like if I was doing this without Ashtyn’s Army.  The lonely feeling caused sudden panic.  I could not do this without the support I am getting.  I feel lifted by every single communication from each of you.

There is so much more I want to share with you.  I want to tell you about her inner strength that she is beginning to recognize.  I want to share with you the growth I have seen in her in only one week.  There are exciting coping skills she is learning.  I’ve noticed independence and emotional stability that I want to relay. There is clear proof that our prayers are being answered, but I am having such a difficult time writing, thinking, and feeling…. I’m tired.

I’ll end with this for now:

A few hours ago I asked, “Ashtyn, you had a good day today, right?”  She said matter of factually  “As good as it gets in the hospital.”  I started “lecturing” as I commonly do, “Well I want you to remember today.  Today was a really good day.  You will have lots of good days like these.  When you are having a really bad day, please remember today, and know that no matter what, you’ll have good days again.”

It doesn’t matter what religion you are.  A prayer is a prayer, and they are all being answered.

Fortifying and Gathering Reinforcements

By | Daily Life, Inspirational, Trials, Triumphs, Uncategorized | 7 Comments
We Can Do Hard THings

These cancer bugs with X’s over them are from Ashtyn’s Grandma Poulsen. They are hung in front of Ashtyn’s bed to remind her that she can do hard things and destroy her cancer.

OK Ashtyn’s Army, we are all fortifying our battlefields and preparing for war!  I can feel it! Ashtyn’s Army is increasing in number, strengthening in faith, and rallying in service.  Comments are being heard, prayers are being offered, hearts are being touched, love is being poured out, visits are adding strength, efforts are gathering, children are being taught, adults are growing, friends and family are uniting, and together we are going to kick this cancer’s butt!

Ashtyn’s Army is doing all they can to strengthen her by utilizing their own strengths.  All efforts are empowering and uplifting.

Ashtyn will continue to have visitors come daily to help strengthen her.  One visitor will help guide Ashtyn to her happy place to find peace and hope.  Another will provide music therapy to sing out anger and joy.  Others will come for girl talk.  She will have those who will massage her and provide essential oils.  Pictures will be taken of milestones, dark times, and triumphs.  There will be times for the calm spirited visitors to sit beside her, providing comfort and not requiring anything from her.  Other times she will have visitors that bring laughter.  Words of encouragement and purpose will come.  There are those who will bring in food that she can tolerate.  Already there has been tranquil music, inspiring talks, funny stories, letters written, and uplifting gifts brought.  She’ll continue to read comments and see support on Facebook and her website.  Purpose has been given to Ashtyn knowing that this trial is not a waste of time.  She will know that her pain, struggles, and sacrifice will not be in vain because of the stories being shared of lives already being changed.

Family Army

Laughing with Kristi and Natalie
Family Army

Opening Letters From School - Friend and Community Army

Opening Letters From School
Friend and Community Army

Nurse Entertaining Ashtyn

Nurse Entertaining Ashtyn
Medical Army

Ashtyn is doing her part in preparing and fortifying too.  She is putting on her armor of strength, determination, independence, confidence, perspective, acceptance, and is starting to take charge.  She is being raised up by your prayers and is getting ready to rock this thing.

HER DETERMINATION:  For 12 hours today she forced herself to eat. Every bite was a bite she didn’t want to take, but she did it.  No way was she going to let some stupid NG tube win.  Every day she will tolerate different food.  A great deal of effort was made to provide her with food she could handle.  After much trial and error, this is what she ate today:  cheesecake for breakfast, a cup of homemade creamy potato soup from my friend Angie, a few bites of Ice Cream, one Trader Joe’s yogurt, 32 ounces of rootbeer, a bowl of Top Ramen, one entire cup of noodle soup, a small Red Mango, and ½ can of Sprite.  She did not throw up once! I am guessing close to 1500  calories again.  Way to go Ashtyn!!!!

HER INDEPENDENCE:  She doesn’t get nervous when I leave the room.  When an aide came to weigh her today she made sure to remind me that she needed to wear the mask to go in the hall.  Ashtyn informed me when she needed to brush her teeth. (The appearance of her tongue is changing however no mucositis yet.  Keep praying that she won’t have to deal with the pain that mucositis causes.)  Though there was no desire for a shower tonight, Ashtyn pushed through her fatigue and showered because she knew that showering every other night is important.  She makes sure that the food she eats is correctly written on the dry erase board.  She does her own eye drops and walks with her awkward IV pole on her own to the restroom.

HER CONFIDENCE:  Ashtyn is now able to talk about the future of when she loses her hair without crying.  She is going to pray and ask, since she’ll suffer the loss of her hair, if He would bless her that her hair will grow back straight instead of curly.  Ashtyn has accepted as best she can that she does have cancer.  She now can hear the words “cancer” and “chemotherapy” without falling into a depression.

HER PERSPECTIVE:  Contemplating cancer and the support she has received she said “At the end of this, I will know how many people care.  If I hear that someone else has cancer, I’ll know how they feel and can help them.  I don’t want to work here because I don’t want to see kids in pain, but I’ll volunteer.”

HER ACCEPTANCE:  Last night she asked, “Am I going to be here for a month?”   I paused and admitted, “Yes you will be.”  The tears came, but only for a brief moment as I explained why she has to stay.  “The doctors are trying to get you home for good as soon as possible.  They figured out the best way to accomplish that goal is to put you on different chemotherapy drugs that I can’t give you at home.  You’ll get the chemo for 10 days.  After 10 days you will be done with the chemo but will have to stay in the hospital 20 more days just to make sure you don’t get sick.  You won’t have any ability to fight infection so you’ll need to stay in your clean hospital room to stay safe.”  Miraculously she was quite calm and accepted it.  I remember only a few days ago how distressed she was at the thought of staying for more than a few days.

After only eight days of being in the hospital, Ashtyn has become noticeably stronger mentally and emotionally, preparing for when she becomes physically weaker.  She has done remarkably well during her first four days of chemotherapy, giving her time to build determination and confidence in herself that she can fight this. Only because of your prayers and support could she have done so well. Thank you.

We Can Do Hard Things

My friend Lisa made one of these posters for Ashtyn and one for my other kids

“I can do all things through Christ which strengtheneth me.”  Philipians 4:13

I Could Not Have Planned It Better Myself

By | Daily Life, Inspirational, Looking Up, Uncategorized | 6 Comments

In the past I have always been one to plan. For years my Franklin Day Planner never left my side. I then converted to Google calendar downloaded to my iPhone.  Each morning I had a good idea what my day had in store. Since being in the hospital I live hour by hour, not knowing how the day will go. I have no idea what I will be doing until I’m doing it. I have no problem just going with it. Today was another day totally guided by God. It was a day full of tender mercies orchestrated by Him who is in charge. I handed over this trial to God the moment I was faced with it and have been very happy to do so.

The one thing that was on the schedule: Chandler, Morgan, and Ethan were going to be at the hospital at 9:30 a.m. to get their blood drawn to find out if any are candidates to be a bone marrow donor for Ashtyn. When they got to the hospital they relayed what Morgan had told Chandler this morning when she woke up. “Chandler, I had a dream last night. I dreamt that you, me, and Ethan went to the hospital and got our blood drawn. Then they had four tubes of blood. Yours, mine, Ethan’s, and Ashtyn’s. They compared my tube with Ashtyn’s. It was not a match. They compared Ethan’s tube with Ashtyn’s. It was not a match. Then they compared yours with Ashtyn and it was a match.”

Morgan was glad that in the dream Chandler was the donor. Chandler felt excitement to be a donor. “I want to be the one to help Ashtyn. It will show that we are connected and I want to help my sister. Along with the fact that I think it would be funny to come out of anesthesia loopy like Ashtyn did and breathe the tasty air when going under.”

From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor. Chandler sometimes has an intense personality that pushes Ashtyn’s buttons. Ashtyn has a completely different dramatic personality at times that pushes Chandler’s buttons. There are moments when love is felt for one another but the majority of the time they drive each other crazy. I know that if any of my kids need to connect, it is Ashtyn and Chandler. They are 19 months apart and are now learning that their bond is much stronger than they thought. We will know in one week whether any of them are matched to be a bone marrow transplant donor for Ashtyn. Please pray during this week that one of my children will be a match.

Morgan getting her blood tested

Morgan was the first to get her blood drawn. After she was poked, with surprise she asked, “That’s it?”

When the blood was coming out into the tube, Chandler did not like the idea that a needle was in his body. But “I wouldn’t pass up a chance to help Ashtyn.”

When the blood was coming out into the tube, Chandler did not like the idea that a needle was in his body. But “I wouldn’t pass up a chance to help Ashtyn.”

Ethan was quiet and brave which is very much his personality. When he got his four shots for kindergarten, he hardly made a sound.

Ethan was quiet and brave which is very much his personality. When he got his four shots for kindergarten, he hardly made a sound.

All done! Posing with the stuffed animals they got for a job well done.

All done! Posing with the stuffed animals they got for a job well done.

 

From the time Ashtyn has been in the hospital, she has not wanted to see her siblings. Chandler is almost 14 and is allowed to come visit in her room. However, Ashtyn has said, “Tell Chandler not to take it personally but it will just make me too sad.” I completely understand what she feels. It would break her heart if she had to watch her siblings walk out the door when her entire soul wants to go with them. She misses them so much and knows that they are going home to where she so desperately wants to be. Ashtyn did not see her siblings today.

How are the other kids handling this new challenge?

CHANDLER is a boy who won’t open up easily. Even if it is clear that something is upsetting him, he will never admit that anything is wrong. Despite my plea for him to not bottle stress up, his philosophy has been “no one can do anything about it anyways, so why talk about it.” Chandler did open up to me today which I am so grateful for. This morning as we walked down the hall to get his blood drawn Chandler said, “I’m hatin it.” I asked, “What’s the most difficult thing?” He said, “You aren’t there to take care of anything.” Later in the afternoon he opened up again. “It’s hard because you aren’t around. It’s also difficult because of the repetitiveness of everyone talking about Ashtyn and cancer all the time.”

MORGAN is a strong girl who sometimes chooses to keep her emotions to herself if she feels they aren’t “good” emotions to have. For instance, if she is mad she will hide it because she doesn’t feel it is right for her to be mad. The past year I have tried to get her to always share her feelings so I can help her through them. When I saw her this morning, she reacted by crying. She misses me but misses Ashtyn terribly. “I don’t see how I will be able to leave the hospital without seeing her.”

ETHAN is a child who has never been a crier. When he is stressed, mad, has hurt feelings, or is in physical pain, he will not cry. Instead he stays quiet but his face tells everything. His eyes cry and his mouth sinks. Throughout the day it seemed like he was doing fine. At 6:30 p.m. he was supposed to go to a birthday party. When Ethan was about to leave he hugged me tightly and began to cry. His cry was audible, which is very rare. I asked him what was making him the most sad. “I miss Ashtyn.” He chose not to go to his best friends party and instead stayed home.

From all that, did you gather that I emerged from the hospital today? At 3 pm I actually got out of my PJ pants, put on jeans, ran a brush through my hair, and headed out the door into the real world. I felt like a lifeless zombie. Morgan was on a weekend retreat with a friend. Jason was spending the evening with Ashtyn. I was going to have a mother/son night with my boys. Where’s the best place to take my sports addicted sons? Scheels: the biggest sporting goods store I’ve seen. We hadn’t had a chance to go yet. Chandler was in heaven. He even told me so, several times. We checked out the BYU section, the small hockey area, walked around the store stopping to play a “bowling game”, and hit pucks at a virtual goalie. Chandler picked out a lime green BYU t-shirt for Ashtyn and a lime green bracelet made out of hockey laces for him to wear to support her.

After Scheels, we picked up Chandler’s friend Oliver and headed to my house so Chandler could watch the Ducks hockey and Jazz basketball games.

Such TENDER MERCIES were given to my family TODAY. God orchestrated a night that worked out perfectly for our needs:

CHANDLER: I was able to spend time with Chandler doing something he really enjoyed doing. He said, “Mom, I loved tonight. I haven’t had this much fun with you in a long time.” Shelley was inspired and had arranged earlier to have her son Oliver hang out with Chandler. Chandler rarely hangs out with friends. He had such a great time having Oliver over and really needed that social interaction. But that’s not all.  Jason’s friend Dave was also inspired to come over, make Chandler’s favorite malts, and watch the games with him.  A neighbor, Joy, dropped off pizza and crazy bread, which is one of Chandler’s favorites.  It was the perfect addition to his unplanned boys night.  Why did Joy bring pizza?  How did Shelley know to get the boys together tonight?  How did Dave know to come over?  They listened to the Spirit, maybe without even realizing it.

 
 

ETHAN: I was able to spend time with Ethan holding and loving him. He didn’t feel right about going to the birthday party and I believe he made the right decision. It gave me three extra hours to give him love.

MORGAN was invited to go out of town with a really good friend Friday night to Saturday. She is then going to a slumber party with some of her aunts Saturday night. I would predict her need was to leave her worries behind for a weekend.

ASHTYN has missed her dad so much. She didn’t feel like having visitors all day and night. Little did she know that Jason was going to be with her for nine hours. She got alone time with Jason that she hasn’t had in a long time. They made her valentines box for school, talked, and watched movies together.  She had a great night with her dad and was able to eat 1500 calories today … barely. “Are my taste buds always going to be like this because this Mac and Cheese tastes like crap and this Wendy’s frosty tastes like poop.”  She gagged in disgust when she ate the frosty.

Jason got to spend the day with Ashtyn

Jason got to spend the day with Ashtyn

JASON hasn’t been able to spend any time with Ashtyn without someone else in the room. He had the same need that Ashtyn had, some one-on-one bonding time with his daughter.

ME: I didn’t realize my need to get out of the hospital. I left the hospital a zombie and came back with energy and life.

I’m back at the hospital to sleep in the bed that will be mine for a few months. I understand Ashtyn’s longing to go home and her broken heart of missing her siblings. As I walked around the house my sadness for her tugged at my heart with a deeper pain. Our home is not the same without her. There is an emptiness in her room, though it looks the same. We will do whatever it takes to get her home for good as soon as possible. Thank you for joining us in this effort. Ashtyn deserves to be home. Her family needs her there. When this trial is complete, I am excited for her to lay in her bed and smile with joy basking in the fact that she’s home.

In Her Own Words

By | Daily Life, Inspirational, Trials, Uncategorized | 18 Comments

Ashtyn Susan PoulsenFROM ASHTYN:
I was at school and didn’t feel well.  I felt like collapsing so I called my mom to pick me up.  She came in and I told her I needed to go to the doctor.  We went to the Holladay Instacare.  I was really scared because I have always hated getting poked with shots.  They poked me five times trying to get some blood to get answers.  Finally they told us to go to Primary Children’s Hospital.  I was flipping out and crying.  When I went home to get my stuff, I was really scared to see doctors, get more pokes, and I didn’t want to spend the night.  Who wouldn’t be scared of the hospital?  Seriously!  My Grandpa Poulsen gave me a blessing.  I do not remember any words but it gave me more comfort than what I had.

After the blessing we went straight to the car and headed off with our stuff.  My mom drove her car.  I went in my dad’s car, just me and him.  We talked.  He said that whatever happens was meant to happen.  That gave me even more comfort so I was calm and peaceful.  When I got to the hospital they gave me one poke to get more blood.  They told me that it could be mono or leukemia or aplastic anemia.  That took all of my comfort away and I was crying and hoping that I wouldn’t have leukemia.  The doctors kept talking about leukemia and that made me even more frustrated.  Then they told us to spend the night.  I thought I would only spend one night and go home in the morning.

A few days later when I found out I had leukemia I cried.  I was scared to be in the hospital longer and I didn’t know what to do.  I felt lost and couldn’t feel the Spirit.  But after a few days I realized that leukemia is not as scary as you think it is.  The word is scarier than what it really is.  I knew that I would be better soon and that God would give me strength to do whatever I had to do to get better.  Not that it’s not scary but it’s not as scary as I thought it would be.

I learned that I will lose my hair.  They need to give me medicine so I can get better and the medicine will take my hair.  I am willing to give God my hair and He will give me strength for whatever they do around here.

My bone marrow procedure was the first time I had a procedure with falling asleep.  I was scared but at the end it really wasn’t anything.  Now that I know what kind of things they do here I am prepared for more procedures and I am prepared for anything….except the NG tube.  Before my CT scans I had to have an NG tube to give me liquid needed for my CT scan.  It was one of the worst… actually it was the worst thing I have had to do here so far.  Now they tell me to have 1500 calories a day.  If I don’t do a very good job at eating the calories, I will have to have another NG tube.  I am trying my very best and forcing food down me.  Even though its hard eating, I think it’s worth not having the tube.  The tube is awful!  Today I felt so full and nauseated.  I threw up around 5pm.  Throwing up is still better than having an NG tube.  I will not give up because I know that I can prove these doctors wrong.  After I threw up, I let my stomach settle for about an hour and then I had some KFC macaroni and cheese and mashed potatoes.  I didn’t throw up again tonight.

I hate this place. A lot.  I am so annoyed when doctors come in my room.  I hate when the doctors come in, sit down, and talk to me.  It seems like their mouths never stop moving and it annoys me.  I sometimes feel stuffy because my room is so small.  I feel I need to breath a little.  I hate being closed in.  I just want to go outside and take a breather.  That sounds nice, just to go outside.  I hate the fact I am a patient.  I don’t like getting so much medicine.  I do not like some freaky nurses.  I hate when hospital people come in and ask me personal stuff and they never seem to leave.  It’s just not cool.  I don’t like being hooked up to an IV pole.  I hate eating so much.  It seems like I am always eating or my mom is always nagging me to eat.  I don’t like throwing up but sometimes in the end it feels better.  I hate the idea of all of this hospital crap.  I hate all the medical words.  I hate how I am woken up in the middle of the night to go to the bathroom.   I hate being away from home and family.

I like visitors and all the cards that people write me.  I like the stuffed animals and presents.  I like to be able to sit in bed all day… well maybe not.  I like that I’m not needing to do any school right now.  I like the thought that I will go home soon…. I mean eventually.  I know that everyday I am here, I am another day closer to being done with this sickness.  Everyday I am here is a day closer to being able to go home.  I haven’t been bored because of all the presents and stuff people have given me.  I know a lot of people are supporting me, loving me, and praying for me.  It gives me more hope and makes me want to fight harder because I can’t let down the Army.  Thank you for all the support and love that you send me.  I am glad to have such wonderful people beside me.  That’s amazing how strangers are reading about me and are concerned about me.  It’s awesome to have friends to lean on and know they’ve got my back.  I love when my family comes to visit.  I love their support and love for me.  As much as I love my siblings, I try not to think much about them.  It makes me so sad to think about them and makes me miss them more.  My mom and dad are always there for me.  My mom is always here in the hospital with me and my dad tries to be here as much as he possibly can with his work schedule.

Sometimes I feel sad.  Sometimes I feel scared.  Sometimes I feel energetic and fired up to do this.  Other days I feel hopeless.  But at the end of the day, I feel ready for whatever’s going to come to me next.

I know that God gives me strength every day and He helps me in everything I do.  He understands what I am going through.  I know angels are surrounding me and protecting me.  I can just feel it.  I know that Heavenly Father has a plan for me.  I know something good is going to come out of this.  I know everyone’s prayers are helping me.  Prayers work.